Cystic Fibrosis Drugs: Orkambi

Rachael Maskell Excerpts

Monday 10th June 2019 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Bailey.

Leading up to this debate, I spoke to constituents, one of whom described the mental strain of knowing that a drug was available but could not be prescribed to their child. Another parent talked about the administration of 22 drugs, and the physio and hospital appointments that were needed, as well as the stress of their child being admitted to hospital. Their child is now 21 years old and there have been no changes, even though there is a miracle drug that could transform their life. Another constituent, Jack, who is seven years old and at the start of his journey, desperately wants hope for his future.

We are at the cutting edge of a generation of pharmaceutical breakthroughs that have the power to transform the lives of people who experience a range of medical diagnoses. It is an exciting point in our journey with medicine, and it could be transformative to patients and carers. To deny therapy is ethically abhorrent. Many Members today have said that this is about negotiation, but I say that negotiation is not the answer. We should not be wrestling over drugs time and time again; we need a completely different framework for addressing the cost of pharmaceuticals.

NICE needs an overhaul to ensure it is fulfilling its role and looking at patients’ life course. I know that it does that work, but it needs to look at its effectiveness over a patient’s life course and at the economic value it can bring not just to medicine, but to the wider economy. It also needs to ensure that the levers are in place for it to look at a portfolio of drugs, as opposed to looking at drugs one by one.

We need to understand how much the NHS can afford to pay for the benefits of new drugs, taking into account the health benefits that could be achieved with the money the NHS must find to pay for them. This assessment, based on a NICE appraisal, could inform a debate about national rebate agreements in the current pharmaceutical price regulation scheme. There are several costs involved: the manufacturing cost, the price the NHS can afford, the NICE assessment and the market price, which is driven primarily by the US market. That is a cause of frustration.

The argument among academics is that a mechanism of a national value-based rebate should reflect the difference between the amount the NHS is willing to pay for the benefits and the manufacturer’s asking price. That would provide better incentives for manufacturers to make long-term investment choices, recoup costs and deliver for the NHS. It would also provide fairer rewards for innovation; manufacturers that produced more effective drugs at affordable prices would not need to pay a rebate, but those that charged more would pay a higher rebate. That would not impact the list price for the global market, and the rebate could be spread across the portfolio to provide better opportunities for manufacturers to bring new products to market.

That would take the politics out of NICE and NHS England. Canada is currently developing something similar, to ensure that drugs reach the places they need to reach. It can be further incentivised: should a manufacturer not supply a product when its production costs mean it could do so without making a loss, it could lose its patent. That would provide the required leverage. We need to hold discussions about this not just across the sector, but with the European Medicines Agency; the impact could be greater with more countries on board.

[David Hanson in the Chair]

People will have seen reports about the generic drug from Argentina, and we have heard about it in the debate today. We cannot allow inequality in access to pharmaceuticals in our country to grow, because it creates health inequalities. People who can pay will be able to afford that drug, and they will have better health outcomes. In the light of the ethics of the debate, the Department of Health and Social Care needs to move fast, now.

We need to be alert when it comes to trade deals with the United States, which is significant to the debate. The US will clearly want to drop the carrot of big pharma in front of Ministers, but that is a serious trap. The President talked about the NHS being “on the table” in his speech about trade negotiations, and we must be alert to the real agenda. It is through big pharma that he will get access to the NHS. As we have already heard, with respect to the size of the NHS drugs budget, that is a way of controlling it. We need to be on top of that.

Instead of drug-by-drug negotiation, we need a framework leading automatically to the leverage required to procure medicines. That will make such a difference. It will remove the uncertainty about different pharmaceuticals, as we move forward through the exciting developments that are taking place. Let us take the politics out of the process and enable NHS England and NICE to do their jobs, even under a new contract. I ask the Minister to do her job and to put a new framework in place.

Health

Rachael Maskell Excerpts

Tuesday 14th May 2019 Commons Chamber

[Matt Hancock]

We have not discussed obesity much during this debate, but the Government have a whole programme to tackle it. That includes tackling advertising and, in particular, tackling the pro-obesity environment in which too many children grow up. There is a broad range of actions on our agenda, with more to come.

[Rachael Maskell (York Central) (Lab/Co-op)]

Will the Secretary of State give way?

[Matt Hancock]

I will give way one final time, but I want to leave some time for Back-Bench speeches.

[Rachael Maskell]

The Secretary of State has boasted about the amount of money that is going into the NHS, but the Government have transferred public health services to local authorities, whose funding is being slashed, and as a result funding for those services is also being cut. Can the Secretary of State say how much of that NHS money will support the role of local authorities in delivering the public health agenda?

[Matt Hancock]

Local authorities and the NHS work very closely in delivering a huge number of services, and authorities often commission services back from the NHS. I can tell the hon. Lady that between 2013 and 2017, the number of attendances at sexual health centres increased by 13%. The suggestion made by many Opposition Members that there has been a cut in the number of such attendances is not supported by the facts.

We will not rest until we can solve these problems.

--- Later in debate ---

[Rachael Maskell (York Central) (Lab/Co-op)]

It is always a pleasure to follow my hon. Friend the Member for Heywood and Middleton (Liz McInnes), who brings her health expertise to this debate.

The discord between the Government’s narrative and reality could not be more stark. The long understood centrality of public health to addressing health inequalities was ably brought to the fore by Michael Marmot’s report a decade ago that highlighted the social determiners of poor health. We therefore cannot just look at health in this debate; we have to look at the wider impact of health across our society.

Of course the Government’s 10-year plan and long-term approach are welcome, but the reality is that there are serious funding cuts to the delivery of public health by local authorities. Half a million pounds is proposed to be slashed from York’s public health spending, which will have an impact on the services to be delivered.

Public health is about the long term, and the disadvantage for local authorities is that, with their strained budgets, they are having to focus on the emergencies today. Of course, local authorities have no levers over the NHS, which ultimately picks up the tab for the failure to deliver a public health agenda. Controls over the system is not in the right place.

Of course, the advantage of moving public health back out of health and into local authorities is that it impacts on education, the environment, the economy, housing and the wider community. We are deeply worried about the ending of public health grants. To date, there is no clear vision of how public health will be funded as we move past the comprehensive spending review. The clock is ticking and plans need to be made now.

In York, the health inequality is eight years between Clifton, the poorest area of my city, and the richest area. The council has slashed long-term contraception services, which has meant a rise in the number of unwanted pregnancies. Health checks have been cut, although they are a major intervention in prevention. We have also had smoking cessation services ceased; in 2010, we had 1,948 people using the smoking cessation service, whereas last year we had just 92.

On substance misuse, I must thank my friend Councillor Michael Pavlovic, whose forensic scrutiny of drug and alcohol service funding highlighted the serious £550,000 cut over a five-year period when usage was at a crisis. Shockingly, the drug death figures for York are the worst not only in Yorkshire, but in the whole country. The Government have not been taking a public health approach to substance misuse and it is vital that that now moves into a public health arena.

We have also seen alcohol being used hazardously in York, with 7% of my constituents—15,000 people—doing so. Some 10% of accident and emergency admissions were alcohol-related in 2014, and in December last year it was found that 33% of admissions to York Teaching Hospital involved people who were using alcohol. Of course, that leads to premature death. We also see the impact it has on the criminal justice system, with 75% of arrests involving alcohol. Alcohol is the influencing factor in a third of crimes. So investing in public health saves not only NHS spend, but wider service spend. Of course alcohol has an impact on the safeguarding of young people. In York it also has an impact on domestic violence. Yet York has 799 premises that sell alcohol. We know there is cost, risk and devastation, and we know there is an impact on wider public services, families and wider society. We therefore need a more comprehensive approach and properly funded public health services.

I ask the Minister whether the Government will look again to ensure that there is a comprehensive screening programme for people across the country, so that they can check in at the key point and transition phases in their lives to ensure their mental and physical wellbeing is reinstated. Local authorities being able to cut these services is of serious detriment.

Oral Answers to Questions

Rachael Maskell Excerpts

Tuesday 7th May 2019 Commons Chamber

[Matt Hancock]

Mr Speaker, I am glad that you have used your considerable flexibilities to bring this question in, because I wanted to say that NICE is in the process of developing a guideline on the management of chronic pain, which will look at the biological, physiological and social factors, including some treatments mentioned by my hon. Friend. There is progress in this space, and I am glad that we have been able to raise this matter in the House today.

[Rachael Maskell (York Central) (Lab/Co-op)]

As well as looking at best practice in the NHS, it is vital that we look at best practice in social care. Given that 70,000 people with dementia were admitted to hospital unnecessarily with falls, dehydration and infections just last year, how is the Secretary of State going to put a laser-beam focus on standards in social care?

[Matt Hancock]

The hon. Lady is absolutely right. I am glad that this discussion of improving quality across the NHS and social care has united the House in its enthusiasm to see best practice and ensure that people learn from it. We have seen an awful lot of learning in social care, as most social care is delivered by private sector providers, but there is more to do and there are different levers that we can pull. When social care providers lose their good or outstanding status, they also often lose their contracts, so there is an awful lot of pressure on them to learn from best practice around the country, and I would only emulate that.

Mental Health Services: Leeds

Rachael Maskell Excerpts

Tuesday 23rd April 2019 Westminster Hall

[Fabian Hamilton]

I thank my hon. Friend—if I may call her that—and my colleague from Leeds for her intervention, because she makes a very important point, namely that we need to begin at the earliest possible age. It is tragic to me, and I am sure to every Member of this House, that an increasing number of young people are showing signs of depression and other mental health problems, and that is evident in our schools. The role of charities is very important, but so is the role of the national health service. Although we need to support those charities, as she rightly says, we also need to ensure that we have the resources within our NHS too.

[Rachael Maskell (York Central) (Lab/Co-op)]

I am really grateful to my hon. Friend for securing this debate, because the Leeds and York Partnership NHS Foundation Trust lost the main contract with our clinical commissioning group as the result of a litany of failures in my constituency, including ignoring three Care Quality Commission reports, which put mental health patients in my constituency at serious risk. My question today is this: will the Minister review the licence of that trust to operate, or not, in light of the consequences of its actions and the harm it has caused?

Mental Health Support: Young People

Rachael Maskell Excerpts

Tuesday 9th April 2019 Commons Chamber

[Ruth George]

As a parent of four children aged between nine and 27, I agree that there are strains from modern life, but when parents need support, they find it far too difficult to access.

[Rachael Maskell (York Central) (Lab/Co-op)]

The waiting times in York are also horrendous. The funding, which has, in fact, gone down in the last year, is just £40 per child. Is not that so insufficient to match need?

[Ruth George]

Absolutely. It will not surprise my hon. Friend to hear that I will come to the issue of funding later, but that is a chronically low figure for the number of young people and children who are suffering.

The number of suicides of teenagers has risen by two thirds since 2010. I pay tribute to my constituent, who says that she is too scared to leave her 14-year-old daughter alone anymore. Having seen her daughter try to take her own life using paracetamol, my constituent is campaigning for the sale of paracetamol to under 16-year-olds to be banned. I ask the Minister to look into that.

We should do what we can to prevent access to the means for young people to take their own lives, but even more, we should look at stemming the reasons why they are driven to such desperation and making sure that treatment can reach them far earlier. Our children are suffering under the weight of demands at the same time as the people who have always been there to support them are disappearing.

Young people suffer from exam pressure, driven by school league tables. An 11-year-old in my constituency, who had always been perfectly happy and is incredibly intelligent, had a panic attack before his standard assessment tests. He said that the children knew that if they did not do well in their exams, their small village school could be driven to close through a lack of parents applying for places. Pressures on children aged 10 and 11 are just too much. My secondary schools say that children come to them in year 7 bearing such a weight of emotional stress that it is almost impossible to support.

There are higher numbers of children with special needs at our schools and less support for them as school cuts bite. There are exclusions from schools, with thousands of children taken off the roll. With fewer support staff in our schools, there is more opportunity for bullying. As the hon. Member for Strangford (Jim Shannon) said, social media enables the continuation of that bullying throughout the day and the night.

--- Later in debate ---

[Jackie Doyle-Price]

My hon. Friend makes an important point. Just as we have the 999 service for physical health emergencies, we need the same provision for mental health emergencies, and that is what we intend to deliver through the 111 service. That is a clear ambition articulated in the forward plan.

[Rachael Maskell]

The Minister said that this is a matter of clinical judgment, but clinicians are unable to make those choices if they lack the necessary staff and resources.

[Jackie Doyle-Price]

There will be cases when it comes down to a clinical decision on whether a referral to a mental health professional is needed. However, we need to ensure that mental wellbeing is embedded throughout our health services.

Oral Answers to Questions

Rachael Maskell Excerpts

Tuesday 26th March 2019 Commons Chamber

[Caroline Dinenage]

My right hon. Friend is absolutely right to raise this issue. We know that the outcome of Lyme disease depends on whether it is diagnosed and treated at an early stage. That is why my Department commissioned four separate independent systematic reviews of all the relevant literature on the diagnosis, treatment, transition and prevention of the disease, which were published in December 2017 and which assess the existing evidence for the research community, research funders and the public. We welcome all independent researchers who want to do more work on that basis.

[Rachael Maskell (York Central) (Lab/Co-op)]

My constituents have faced many challenges in relation to Lyme disease. They have had to go overseas to be tested and given a diagnosis. However, the NHS does not recognise those tests. What is the Minister doing about that?

Health and Care Professions Council: Registration Fees

Rachael Maskell Excerpts

Thursday 14th March 2019 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under you in the Chair, Mr McCabe. I was also registered with the HCPC and the preceding bodies. Although I am no longer registered, I recognise the impact this issue has on NHS staff.

There are nine different regulators in the NHS, regulating 32 different professions. They provide a very important function: this is about protecting not only the public, but health professionals themselves in the course of their practice. The regulators are there to set, maintain and raise standards and to give confidence to the public, as well as to hold a register and protect the title of a profession, so that other people cannot set up a business pretending that they hold the professional qualifications, which people across the NHS work hard for.

Increasingly, regulators also ensure continuing professional development. The most advanced programme of professional development has been put in place by the Nursing and Midwifery Council in recent times. The regulations around that ensure that registrants are compliant with continuing professional development. The function of regulators is to ensure that professionals who fail to uphold professional standards and their duty of care are called to account, so that sanction is applied where necessary and recourse is taken.

We have already heard that—thankfully—a miniscule number of professionals are taken through disciplinary processes. That is a tribute to the great professionalism across the NHS. However, such cases do occur, and it is appropriate that rigorous processes are in place so that individuals can defend their position and have recourse to justice before appropriate action is taken. To have someone practising who is not fit for practice risks the whole profession, so it is vital that that is put in place.

However, the cost of that process has escalated substantially, as hon. Members have mentioned. When I first registered as a physio, I had to pay only £17. In 2015, the last year that I was registered, there was a huge increase—from £80 to £90. The suggested increase to £106 is, quite frankly, unacceptable, particularly given the background, as set out by hon. Members, of a decade of pay regression, pension cuts and student loan repayments. In my time we had grants, so things have changed significantly.

More and more burdens are being placed on health professionals. That means that more risk is placed on health professionals. When we had adequate staffing in the NHS, mistakes were less frequent and caseloads were safer. Unfortunately, in many professions people’s caseloads are now too big. The pressure on those individuals increases.

I was formerly head of health at Unite. We focused on organisations’ duty of care. Managers in particular must say no to the organisation and argue the case for more staff, rather than increase the pressure on health professionals by making their caseloads unsafe—that would mean that managers were failing in their duty of care, in breach of their standards of professional conduct.

[Mike Hill]

I am also a former Unison official. In view of that, does my hon. Friend agree that, as my hon. Friend the Member for Heywood and Middleton (Liz McInnes) rightly pointed out, the professional bodies cover not only full-time and part-time staff, but student social workers and student nurses? They are under the same constraints.

[Rachael Maskell]

Students do have responsibility, but the registered health professional is responsible for ensuring that they are safe under their practice while they are training in their profession. Training the future workforce is an incredibly important additional function of health professionals.

The Law Commission came forward with a set of recommendations for registrant bodies in 2012. In 2019, we still have not seen the implementation of those recommendations in full. I would like the Minister to explain why that is the case. Implementing a substantial piece of work about ensuring patient safety should surely be at the forefront of the Minister’s agenda. I am interested to hear the reasons for the delay, and what plans there are to put those recommendations in place. Training programmes for health professionals need to focus on the ethics, behaviour and conduct of health professionals, if we want to see a reduction in the number of cases. Managing that risk is really important.

I want to raise a number of points to move this case forward. First, as we have heard, 38,000 people signed a petition to register their discontent with the fee rise. That cannot be ignored. These are valuable NHS workers. Their call must be heard and reflected on. However, the HCPC hardly seems to have taken that into consideration. As my hon. Friend the Member for Heywood and Middleton (Liz McInnes) said, the number of fitness-to-practise cases being taken forward—currently, 59% of them involve social workers—will disappear. Therefore, surely the registrant body’s costs will decrease. We want to hear how that will benefit health professionals.

This is a tax on professionals. Will the Minister consider funding that regulation fee through the NHS? It does not make sense for nurses, physios and speech therapists, for example, to pay a different amount. That is a tax on professionals who have put in the training and the hours, and go over and above the hours. Why can the Government not pay the amount for each health professional? More than a gesture, it is a responsibility of the NHS to ensure that its registrants, including part-time workers, have that support. I completely concur with the suggestion made by my hon. Friend the Member for Heywood and Middleton that there should be a part-time rate.

[Dr Drew]

Forgive me if I am being simple, but do we know where the extra money is going and what the HCPC is doing with it? Can it explain that? Are the Government holding it accountable? Can my hon. Friend throw some light on that?

[Rachael Maskell]

My hon. Friend makes such a good point. I wish I could explain that, but to me it seems to be more money and less work. I am as baffled as he is about why health sector workers have to pay into this institution to do less work. I worked as a part-timer when I was head of health at Unite. Although I worked at weekends, I had to pay the full fee, so I certainly understand the frustration. Of course, that mainly affects women, who are more likely to work part time.

Finally, I ask that an expansion of the number of registered health professionals should be considered—after all, this is about keeping the public safe. We should know that the title under which the professional acts is secure and represents them. Certainly psychological services, such as psychotherapists, have requested to be registered, as have community nursery nurses. It is perplexing that the registration of nursing associates on a register—not this one—has been accelerated, but the registration of community nursery nurses, who have long asked for that, has not happened.

I would go further and say that, as we are looking at the future of the social care workforce across the country, we should also look at individuals who are singlehandedly going into people’s homes but who do not have the protection of being on a professional register. Ultimately, that is about keeping the public and our health professionals safe and secure. What steps is the Minister taking to ensure that a greater number of professionals are protected under the existing regulatory regimes?

Eating Disorders Awareness Week

Rachael Maskell Excerpts

Wednesday 27th February 2019 Westminster Hall

[Kirstene Hair]

My hon. Friend is absolutely right. The sufferer of course needs specialist support, but I will go on to speak about how I believe that we also desperately need to support families and, indeed, all those around them. This disease is so complex that it is often difficult to treat and, trapped in the disease, sufferers feel that there is simply no way out. Many believe that if the disease does not take them, they will take their own life, just to rid themselves of it. No matter how strong an individual is, an eating disorder is so all-consuming that once it has taken hold, some people believe that they will never live a normal life again, and many do not: the condition becomes chronic for about 20% of sufferers.

Normally, a series of events has encouraged the person’s mind to think differently about their body image. Perhaps they have decided that they are not good enough: one too many times, people or life events have created a narrative in their mind that they are inferior to those around them, or perhaps life is out of control in many aspects—nothing is going right. They compare themselves with others around them and see only the negatives in their own life and the positives in other lives, but they can take back control of one aspect of their life—control of what they eat. That may well start off as a diet, but not a diet that would be followed by a normal individual, which often fails. It soon becomes a focus and then a more extreme calorie-counting exercise that involves hiding food, burning off every calorie possible and social isolationism. Before they know it, the candle is burning at both ends. Before a sufferer has identified that they need help, the registered impact on their body is always perceived as being caused by some other reason. There is a voice inside a sufferer screaming that too much food is being consumed or not enough exercise is being done—praise when they miss a meal or hear the sound of a rumbling stomach. That voice inside a sufferer will not and cannot go away.

The loved ones around a sufferer see their daughter, son or friend fade into a shadow of their former self; they are helpless in every way. Parents struggle and are in emotional turmoil. They know that if their daughter falls and skins her knee, they can bathe it, put a plaster on it and make it better. If their son is upset because he is struggling at school, they can get him the support that he needs. We have solutions, and it is human nature to want to fix and help those we love. However, when it comes to eating disorders, everyone is helpless and feels hopeless. No one, unless they are trained, can provide support, other than the individual themselves. Many, if not all, sufferers who have managed to recover will say that it was the hardest journey that they have ever taken, but having spoken to some of Beat’s bravest ambassadors, we have seen at first hand the amazing, inspiring individuals they can become—but that is only if we help them.

As a result of the stigma attached to eating disorders, black, Asian and ethnic minority people, lesbian, gay, bisexual and transgender people and people from less affluent backgrounds are less likely to seek and get medical support. Research developed ahead of today’s debate showed that four in 10 people believe that eating disorders were more prevalent in white people than in other ethnicities, yet research shows that they are just as common or more common in the BAME community. Thirty per cent. thought eating disorders were more likely to affect the more affluent; in fact, they evolve at the same rate irrespective of education or income. Sixty per cent. of respondents believed that they affected only young people. That is having a significant impact on adults coming forward for support, and we see men and boys not being referred as soon as girls and females.

The statistics might not be surprising, but we have to challenge them continually. They are preventing certain groups in society from appealing for help, and creating an inequality in support. As a result, people are more ill by the time they are referred, making the recovery process much more difficult and sometimes impossible. We have seen fantastic work by members of the royal family as well as other notable figures, who have raised awareness of mental health disorders and who seek to break down the barriers to people speaking out, but also recognise that it is okay to talk and okay for someone to say that they need help.

When sufferers reach out for help, they have often been suffering for years. They need urgent specialist help immediately. The average cycle of relapse and recovery lasts six years, and there must be constant efforts to reduce that. To undo months and years of torture, specialists need time and resources to allow a patient to open up, to analyse, to find out the root causes, to get under the skin of the issues and to develop the mind to fundamentally change—a long-term approach, but a life-changing one.

Families, too, need guidance and support on how to deal with this troubling time. Many do not know where to go for support. This was one comment from the social media campaign that I ran before the debate:

“When anorexia arrives in a family it is like throwing a grenade into a home and watching it explode...caring for my daughter has impacted on the mental health of all those in my family.”

That is why I agree with my hon. Friend the Member for Henley (John Howell) that family-based therapy would provide a much-needed support base throughout the recovery process.

Without the investment of time, those patients will be back in our GP surgeries and hospitals time and again. We must look beyond weight. This is an issue of the mind, so whether it is a case of referral or recovery, it cannot be determined by the number on the scales. As a result of the digital campaign that I ran, I heard from many people up and down the country, and I thank them for coming forward with their stories. One person, who wished to remain anonymous, said that

“my granddaughter never got so thin but she died nearly 7 years ago at the age of 19 and I feel that if there had been some positive help she would have been alive today.”

She had been disregarded simply because her weight was not low enough. Recent research shows that GPs do not have adequate training for supporting individuals who have an eating disorder, with three in 10 sufferers not being referred when required.

[Rachael Maskell (York Central) (Lab/Co-op)]

rose—

[Mr Adrian Bailey (in the Chair)]

I call Louise Haigh.

[Rachael Maskell]

The hon. Lady is making an excellent speech. I am troubled by the fact that, a year on, services in York are still completely inadequate. On Friday, I spoke to GPs who are trying to manage individuals with eating disorders. They have been instructed to take patients’ blood, to monitor the electrolytes, and to weigh them frequently, without the psychological support and clinical competencies that are necessary. Is it not absolutely essential that GPs receive the training that they need, so that we can put in place the holistic services that patients need?

[Kirstene Hair]

The hon. Lady is absolutely correct. I will come on to speak about that in detail. I hope the Minister will give further detail on how she is approaching that with other Departments.

In any five-year medical degree at UK medical schools the average amount of training in eating disorders was 1.8 hours, and one in five gave no training at all. The concern is not confined to one part of the United Kingdom; it is a widespread issue across all nations. That seems absolutely extraordinary, given that this is one of the most fatal mental health disorders, affecting 1.25 million people. GPs must be able to tell the difference between a healthy exercise routine and a compulsive one, low body-mass index and lack of nutrition, and going through a diet phase and the beginning of an eating disorder. They must recognise the clear indicators and how eating disorders manifest in order to deliver the right treatment plan, but to do that they need training.

I would like to see further encouragement of self-referrals and more work with schools, where many members of staff may be able to identify unusual behaviour. I warmly welcome the approach taken by my secondary school, Brechin High School, which has appointed a member of staff to lead on mental health who has a support base within the school and is linked up with the local primary schools, so that at the end of primary school, when an eating disorder—or any mental health disorder—may begin to develop, that support is monitored and continued as pupils enter secondary school and progress their education. I am keen to hear from the Minister how the training aspect can be addressed. I would like to hear from the Scottish National party spokesperson how the Scottish Government could do more to include training within university tuition, and how they will address the role that schools can play in early intervention.

When help is needed, how long do we have to wait? Waiting time targets have been a focal part of the campaigns run by many charities for years. In England and Wales, by 2021, 95% of eating disorder referrals for those under-19 are due to reach a specialist within four weeks, and within one week for urgent cases. Will the Minister confirm that the Government are on track to deliver that target, which is already making a huge impact? Along with the charities, I warmly welcome the ambition shown by this Government.

This is not a political debate and I do not wish to make it one. However, once again, when I wrote to the Scottish Government asking why they refused to equalise that target for young people, no substantive reason was given. I have also asked the Scottish Minister for Mental Health about that, and I look forward to her response. The UK Government have stepped up to treat under-19s. I encourage work so that those targets continue to be ambitious. We know that the sooner patients are seen, the higher the chance of recovery and the lower the long-term cost to the NHS. The current 18-week target in Scotland simply has to be addressed. When sufferers determine they need help, their illness is more likely to be treatable, but by the time they may be seen, the likely outcome is much more negative and potentially fatal. I want my constituents to have the same opportunity for early intervention as people south of the border. I want the Scottish Government urgently to address this needless inequality.

As we know, those with an eating disorder often take up to three years to identify that they have such a disorder. Sufferers must do two things: realise something is wrong and wish to make themselves better. When a sufferer comes forward, given their scepticism about all those trying to help them, we have a moral responsibility to grasp their ask for help and support them as a matter of urgency. That requires step-by-step help, to nurture these fragile but wonderful people and not let any of them fall out of the system.

I want to conclude with a point about social media, which is a force for good in many ways, but a stain on the life of many families, which recognise it as the tool that tore them apart. All age groups regularly browse online to determine what everyone else is up to or to catch up on the news, but they normally see only positive news. I have not seen one Instagram image of anyone in this room getting up in the morning, doing mundane things, such as washing the dishes, or having a bad day at work, because we submit only positive images. However, if we also put out negative images, things might feel slightly more normal.

Social media is a platform for showcasing the positive aspect of our lives, with no balance of the negative aspect that we encounter every day. For someone with an eating disorder, or any mental health disorder, that only accentuates their problems. Recent cases have made us all stop and think. There is so much pro-ana and pro-mia material promoting a harmful mindset, which forms or heightens an eating disorder. We must not forget that this material is often put up by sufferers themselves, so we must push supportive materials towards those who promote such images and material.

I do not believe that that is above any of the social media companies. The Secretary of State for Digital, Culture, Media and Sport made a hugely positive step forward in that respect earlier this month. Will the Minister explain the conversations that her Department has had with the Department for Digital, Culture, Media and Sport? Social media platforms cannot take all the positives of social media, but refuse to take responsibility for some of the damage it causes.

In summary, I would like to thank all hon. Members for supporting this debate. I know that it is close to the hearts of many in this place. I hope that the Minister will show those who have suffered, those who are suffering and those who do not yet know that they will suffer that this Government are on their side. I hope the Minister will show that we will never rest on our laurels, but will continue to address the flaws and increase our ambition, reduce waiting times, develop support and facilities for all who need it, wherever they live in the country, intervene early and offer the right support throughout the whole process, expel the postcode lottery of support, encourage our world-class universities to improve teaching programmes, so that they are in line with the impact this disease has on so many, and ensure that social media companies play their part in bucking this trend. We have to help those who are, through no fault of their own, helpless about their own aid. For many it will be the first time in their lives, because that is what Government is here to do: help you when you cannot help yourself.

Orkambi

Rachael Maskell Excerpts

Monday 4th February 2019 Commons Chamber

[Bill Wiggin]

I am sure that the hon. Gentleman’s constituents will be grateful to him for raising the issue in the House this evening.

Every week, five babies are born with the disease, according to Great Ormond Street Hospital, and every week two young people die as a result of cystic fibrosis. The disease accounts for 9,500 hospital admissions and over 100,000 hospital bed days a year. There are two main ways to treat cystic fibrosis: conventional treatments target the symptoms, and precision medicines such as Orkambi tackle the cause of the condition. For conventional treatment on the NHS, the average waiting time to be admitted to hospital is 45 days.

Orkambi presents a relatively safer, more effective and clinically meaningful alternative. In treating the root causes, it reduces lung damage and cystic fibrosis-related diabetes, and improves pancreatic function. The drug has been approved by the European Medical Association, and the Food and Drug Administration in the United States. It avoids the high risk associated with organ transplants.

Orkambi treats the F508del mutation, which around 50% of people with CF in the UK carry. Essentially, the drug permits more chloride ions to pass into and out of the cells. This helps to keep a balance of salt and water in affected organs. Ivacaftor is one of the active substances in Orkambi. It increases the activity of the defective cystic fibrosis transmembrane conductance regulator protein, thereby making the mucus less thick. Decline in lung function is the most common cause of death for people with cystic fibrosis and, although not a cure, Orkambi has been found to slow the decline in lung function by 42% and reduce hospitalisations by 61%.

[Rachael Maskell (York Central) (Lab/Co-op)]

Before coming to this place, I was a respiratory physio and worked with many people with cystic fibrosis. The cost of hospitalisation and treatment far outstrips the cost of this drug for many people with cystic fibrosis. Should not the National Institute for Health and Care Excellence change its criteria and look at the value of life, instead of only the day-to-day cost of this drug?

[Bill Wiggin]

No, I do not agree. The purpose of this debate is to a show an alternative that allows NICE to spend taxpayers’ money on drugs for other conditions while still allowing cystic fibrosis sufferers to have access to this vital drug—and not just to Orkambi, but to the next generation of the same sort of drugs. Bear with me because we have not got to the good bit yet.

In July 2016, NICE recognised Orkambi as an important treatment, yet was unable to recommend the drug for use within the NHS on grounds of cost-effectiveness. The drug is estimated to cost around £104,000 per patient per year and must be taken for life. Orkambi is not provided by the NHS, except in rare cases on compassionate grounds. It remains patent to its manufacturer, Vertex Pharmaceuticals, under UK patent law. In July 2018, NHS England made what it said was its best and final offer to Vertex of £500 million over five years. This was described by the NHS as the “largest ever financial commitment” in its 70-year history. Tragically, Vertex rejected the offer.

We all know that it is essential that a solution is found as soon as possible to make the drug available, as every day counts in slowing the progress of the disease. In an email to me, Vertex states that it

“is committed to finding a sustainable solution for access to our medicines for Cystic Fibrosis patients, including Orkambi”.

That is not quite the impression I have received so far. I sincerely hope that that is indeed its highest priority.

The drugs that constitute Orkambi—Ivacaftor and Lumacaftor—can be synthetically developed at low cost, yet their price remains inaccessibly high.

NHS Long-term Plan

Rachael Maskell Excerpts

Monday 7th January 2019 Commons Chamber

[Matt Hancock]

Yes. I have discussed the proposals made by my hon. Friend and his Northamptonshire colleagues with the Secretary of State for Housing, Communities and Local Government. We are both enthusiastic to see what can be done, and I invite my hon. Friend into the Department to speak to my officials about how this could be done. His proposals are, by design, entirely consistent with the proposals in paragraph 1.58 of the long-term plan, and I very much look forward to working with him and his Northamptonshire colleagues on making it happen.

[Rachael Maskell (York Central) (Lab/Co-op)]

Health visitors are vital to delivering early intervention and prevention, yet their numbers are in freefall—falling by 23.5%, or 2,425 health visitors, since October 2015. Health visitors are now working with dangerous caseloads, so when will the Secretary of State ensure that we have safe delivery of health visiting services?

[Matt Hancock]

The hon. Lady is dead right. Of course, health visitor numbers went up very sharply between 2010 and 2015. In fact there is a proposal in the plan, and the NHS will be discussing with Government the best way to commission health visitors. Health visitors are clearly a health service but, at the moment, they are commissioned by local authorities. We look forward to working with the NHS and with the Ministry of Housing, Communities and Local Government on how best we can commission health visitors in future, because they are a critical part of maternity services.